I write about alcoholism from time to time in this blog because I feel it has much common ground with schizophrenia. There is the condition itself, which I consider a spiritual conflict, but there is also the framework of Alcoholics Anonymous, involving a program, similar in some ways to the day program that our family was involved with for schizophrenia. AA is run by its members, not by medical professionals. In this regard, it is not like our day program.

No program is above criticism, and there is an interesting piece today from the Huffington Post that raises the question, how come, after seventy-five years of AA there aren’t more success stories?

Given that AA started in 1935, that it is still not proven to be successful is beginning to be a bit worrisome. Do drinking and drug problems, alcoholism and addiction, seem to be improving in the United States? (Hint: according to the National Survey on Drug Use and Health, 25 percent of 21-year-old Americans have a diagnosable drug or alcohol problem — far and away most often an alcohol problem.) Don’t you think we might be doing a little better in this area after 75 years?

Robert Whitaker asks these kinds of questions and more in his new book Anatomy of an Epidemic. These kinds of questions kick-started my interest in alternative therapies. Surely, I thought, there should be better outcomes after all these years for schizophrenia than the bleak picture that is usually presented. There are better outcomes, but you’ve got to do a little digging to find out where they are.

These questions need to be explored, not just for AA but for current approaches to schizophrenia and other mental health conditions. Most people will not recover in a program – they will recover when they get to the bottom of whatever it is that is troubling them and when they begin to accept personal responsibility. That is why, as the article points out, a wide variety of treatment options should be available. There is no one size fits all when it comes to mental health.

I just don’t have much motivation these days. It’s way too hot. I drag myself into work early and leave early as the office isn’t air conditioned. When I get home Chris and I drive down to the lake and jump in. We paddle around for a while before driving home and preparing a light meal.

Progress report on Chris: We are in a holding pattern. Chris does lots of volunteer work, such as working at the soup kitchen once a month on Saturday morning. He likes to cook and the food looks good on a plate. He is precise, punctual, thorough, and you can be sure if you ask him to do something, he will do the job well. Last Sunday he filled in for me as an usher at church. His once a week voice lessons are over for the summer and will resume again in Sept. He’s reading lots of intellectually challenging books. He also reads the Bible everyday. He is very slowly reducing one of his two meds. But, to speak with him and to observe him from a distance, there is a lag. If you ask him a question, there is a long pause before he answers, if he chooses to answer at all. If you watch him from a distance, you can see that he is hesitant. I used to think this was due the drugs, but I can’t blame the drugs for this one. I consider it the physical manifestation of his internal doubts.

Chris has been seeing an occupational therapist for a year now since he left the psych hospital after his relapse. I am trying to be patient with the fact that he seems to be dragging in the area of getting some kind of training, something that will regularly occupy his days. Ian and I have given up on the idea that he will be heading back to university, at least we don’t see this happening, if it happens at all, until he is 28 or even 30. We have decided to be philosophical about this because we are determined to be low Expressed Emotion, to give him time to knit together who he is, to come up with his own blueprint. He is being helped in this regard with the sessions with the sound therapist that he undergoes on a regular basis. It takes a long time to go from zero to cruising speed when it comes to personality development.

Still, it would be nice if he got going and had something to occupy his days. He has been talking about a three month computer technician course at a local trades school. I notice that despite professing enthusiasm for this, he manages not to make enrolment a top priority, therefore I am not sure if he will be starting in August or not. Ian and I will be away and it will be up to Chris whether he makes this happen. I feel something in him is holding him back.

Dr. Stern has introduced a new possible and surprising direction for Chris based on the last Constellation that Ian and I undertook where she had been groping to find the right words for his non-earthbound personality characteristics. She feels, in her words, it is “being like a good host for a group of people which might correspond, on a concrete level, to a professional activity in the hotel or tourism business.” She recalls his interest in “cooking for the family, for being useful for people, e.g. being helpful for members in the church community, for being a senior student at his college who welcomed first year students, his appeal for high standard places like Grand Hotels, his appeal for being very well dressed, and his interest in learning foreign languages.”

On a spiritual calling level Dr. Stern’s use of the word “host” is very interesting. Recall that Jung felt that addiction to alcohol (spirits) is a spiritual quest. According to the Catholic Encyclopedia:

The function of the angelic host is expressed by the word “assistance” (Job 1:6; 2:1), and our Lord refers to it as their perpetual occupation (Matthew 18:10). More than once we are told of seven angels whose special function it is thus to “stand before God’s throne” (Tobit 12:15; Revelation 8:2-5). The same thought may be intended by “the angel of His presence” (Isaiah 63:9) an expression which also occurs in the pseudo-epigraphical “Testaments of the Twelve Patriarchs.

But these glimpses of life beyond the veil are only occasional. The angels of the Bible generally appear in the role of God’s messengers to mankind. They are His instruments by whom He communicates His will to men, and in Jacob’s vision they are depicted as ascending and descending the ladder which stretches from earth to heaven while the Eternal Father gazes upon the wanderer below.

When it comes to occupation, Ian and I are still getting used to this possible role for Chris. At first we felt that his always being with us, always wanting to help, never asking anything of himself, was a sign of dependency, but I can see now that there is another way of looking at this, in line with my growing understanding that “schizophrenia” is communication of the highest sort.

The New Yorker ran an article back in October 2007 entitled We are All Larry David. Larry David is the creator, along with Jerry Seinfeld, of the television mega hit Seinfeld. If you have ever seen his subsequent show, Curb Your Enthusiasm in which Larry David is front and center, Larry David makes Woody Allen look like a people person. He seems to have no redeeming qualities. He is neurotic, horribly inept in his personal relationships, and well, in my opinion, not at all funny. My son Alex loves Larry David, demonstrating once again that there is no accounting for taste, and I respect that.

The New Yorker article is about a second year psychology student who worked for a summer teaching social skills to a group of “schizophrenic patients” at a state hospital. He was having a difficult time trying to get his patients to role play everyday social situations until he hit on a brilliant idea. And do you know what this brilliant idea was? Watching television with his patients! Not just any TV show but Curb Your Enthusiasm, which really struck a chord with this group, no doubt due to the heavy doses of neuroleptics they were on (my opinion, not the article’s).

I won’t go into my opinion of this article, but just offer it up as further reading material. You can access the article here.

Gianna Kali has reposted a 2007 opinion piece today by Furious Seasons’ Phillip Dawdy where she takes eloquent issue with his opinion that accepting your diagnosis is mandatory on the road to recovery. This idea of accepting your diagnosis is widespread and the thinking is that you are delusional if you do not. Today, many people proudly proclaim that they are their diagnosis. Coincidentally, more and more people have that diagnosis. Wearing your diagnosis goes beyond what the Dawdy piece is saying, but it’s a slippery slope. Accepting can become defining.

In mental health, pardon my ignorance, but what exactly is the basis of the diagnosis? There is no test for schizophrenia, no gene, and no drug fixes the problem, so what is it exactly that is being medically diagnosed?

A mental health diagnosis is not a broken leg. A mental health diagnosis is a sliding opinion underpinned by dubious science.

After you’ve accepted this diagnosis, then what? Will you be open to accepting any label that someone else sticks on you? I could have spent years urging my son to accept his diagnosis, but that would have done more harm than good, in my opinion. In fact, at the beginning my husband and I did urge my son to accept his diagnosis, because this is what the doctors told us Chris must do. In another post I wrote that accepting your diagnosis when you are labeled schizophrenic is akin to a teacher telling you that you are stupid, but if you want to learn you’d better first accept the fact that you’re stupid. Any learning you manage to accomplish after that will be the result of an heroic struggle at the expense of your own stupidity.

Robert Whitaker’s book has pointed out the pitfalls of becoming your diagnosis: Lifelong patienthood.

If I had it to do all over again, I would never have told a soul that Chris had been given a diagnosis of schizophrenia. I don’t know how I would have fudged this the past six years when anyone could see he had a problem, but I was operating under the delusion that there is no stigma in being mentally ill and the first thing to do is to accept your diagnosis. I also felt that if I told people, I could learn things from them that would help. In fact, most people haven’t a clue, and I had to do all my own discovery.

It hit home again at lunch today. My friend wanted to know how Chris was doing as she had seen him on one occasion last year when he was on a day pass from the psych hospital. Ian and I had foolishly decided to take him to a special interest group lecture and he spent the time being rather unusual. (Word to the wise. If your relative is out of the psych hospital on a day pass, best stay home.) My friend expressed surprised that (a) Chris actually can read books and (b) that he was able to travel around freely by train. Like most people, she has no clue what a diagnosis of schizophrenia entails, but like most people, she thinks it’s lifelong and handicapping. My father went to his grave feeling sorry for the burden that he felt I was going to have to carry the rest of my life. He also had no experience with mental illness beyond what the doctors say about the awful label of schizophrenia. My trying to convince my father otherwise was an exercise in his humoring me. He felt I was putting the best possible polish on a bad situation with my talk of Chris eventually leading a productive, interesting life.

It would be far better to reject the idea of accepting your diagnosis, but be willing to admit, as the Dawdy article puts in a more secondary light, that what you really have is a “problem.” That’s a diagnosis you can overcome.

Readers may ask, so why is it then that you put schizophrenia front and center in your blog if you reject the label? The answer is so that other people can find their way after they’ve been handed this label.

When I retire from my day job in a few years , I think I want to be a hippie. Back in the sixties and seventies, when I actually could have been a hippie, nothing interested me less. I felt uneasy with the drug scene, the people who celebrated it, and if anybody ever referred to me as “Mother” or “my old lady” I would have . . . well, it wouldn’t have happened because I just didn’t do the scene.

Forget the drug culture – I won’t be growing marijuana plants in our back yard, nor will Ian and I be heading to the Burning Man Festival in a painted VW van. The part of the hippie scene that I finally found some respect for is the embracing the mystical, the turning one’s back on materialism and looking at homegrown solutions. I’ve become softened to this by critically looking at the way pharma creates imaginary diseases to sell its products, but I’ve also had my eyes open to the true magic in this world, thanks to the journey I’ve been on. Call it new age, or hippie, that’s where I’m headed.

I will no longer buy products that I don’t need or where a cheaper substitute can be found. It’s not just pharma that creates an imaginary need. Today I was admiring the geraniums on my balcony and see that they’re doing just fine without fertilizer. I no longer have expensive, partially used fertilizer bottles cluttering up the place. I’ve been conditioned to feel that balcony plants need this stuff, just as I was conditioned to believe that the one and only prescription pharmaceutical product I take needs to be taken twice a week. After pestering my doctor, I learned I could take it once a month or less. (She lowered her eyes as she whispered this trade secret to me.) Now there’s a tip not in the product literature. I also found out rather late in life that Vaseline is the best all-round moisturizer.

Maybe what I’m talking about is not actually being a hippie. Perhaps I’m just getting old and wising up. But, I am forever grateful to hippies for understanding certain things early that I picked up on rather late.

There’s not much of an industry in portraying mental illness as fun, which is a real pity ’cause there are a lot of funny things that happen. Finding the humor in mental illness is therapeutic. Instead, most of us are led to expect that it is dreary, soul-destroying and life-long. In short, serious business. Certainly that’s the impression I always came away with after speaking with most, not all, of Chris’s psychiatrists. Our life very quickly took on all the fun of a medical text book.

When we learn to see the lighter side of madness there’s no telling the leaps and bounds we can make towards recovery. I personally feel that laughing and learning to laugh at ourselves means all’s right with the world. I’m putting in a special plug for the blog Amsterdamned. It’s a short blog so you can get up to speed quickly on our hero’s cannabis and mania induced adventures in the Netherlands. He has recently had the good fortune to end up in a Dutch jail (as opposed to a Turkish or even an English jail) and that’s where the second leg of his adventures begin.

“Do the needful” is one of those quaint Indian English expressions, like “donnybrook” and “fisticuffs”. “Sir, I implore you, do the needful!” As I was walking to work today my fertile brain flitted from random thought to random thought, until, for some inexplicable reason, I hit upon “do the needful.” Do the needful for what? I am thinking. For Chris, of course, for others. I got to thinking about do the needful because my mind turned towards street people and my own prejudice tells me that their relatives are not doing the needful for them. We can only blame “the system” and our relative’s own problems for so long before we must look at ourselves and wonder why we are not there for our relative. We have all kinds of excuses, of course that any of our friends and family would sympathize with, but when push comes to shove, we should not abandon our relative to the street. Had the medical profession given us a more hopeful scenario, encouragement and insight, I am convinced that we wouldn’t have so many people on the street.

Doing the needful also means getting your own house in order.

If you don’t read, starting reading.
If you don’t believe, start believing.
If you have no faith, begin developing one.
If you don’t meditate or do yoga, think about starting.
If you don’t believe that something is possible, begin by suspending disbelief.
If you think there is only one way, think again.

Inasmuch as religious feeling is part of the process of growing up in modern society, it is most often relegated to the category of the irrational, and can then be regarded as unprovable, and so, unreal. Logical thought and action appear alone to determine reality. The transcendental gradually diminishes in importance because it is never personally experienced. And the main reason for this is a fundamental misunderstanding of the nature of God. The Divinity is not remote from us at some mystically infinite distance, but inside each one of us. It should inspire us to lead our lives in harmony with the Infinite — to recognize our short existence on Earth as part of the eternal Whole.

For centuries, Western thought has viewed the individual falsely as a being separate from God. In the ‘enlightened’ twentieth century, modern Western thought seems less certain than ever about possible answers to the most ancient human questions about God and the meaning of life. All over the world, new spiritual centres have sprung up, attempting to give answers to these questions — questions which the rigidly held precepts of Church officialdom cannot answer. A kind of ecumenical world religion of the future is in ascendance. It is moving towards self-realization, towards a search for Enlightenment, towards a mystical and consummate vision of the cosmic context of one’s individual existence, and all this by means of contemplation, self-knowledge and meditation.

The most forceful impetus for promoting such an internalization of religion has always come, and will continue to come, from the East, primarily from India. Western Man must now reorient himself in the most literal sense of the word — turn towards the eastern dawn. The Orient is the origin and source of our experience of the inner realm.

From Jesus Lived in India: His Unknown Life Before and After the Crucifixion, by Holger Kersten, Pg. 5

Today’s New York Times article is about how advances in medical innovation, such as pacemakers, mean that many of us will become progress’s casualties, or, as the author writes about her parents, “At a point hard to precisely define, they stopped being beneficiaries of the war on sudden death and became its victims.”

Normally, I don’t like to introduce such a somber note into my blog, but I think the article shows the similarities between access (or lack of) to full information for both psychiatric treatment and other medical treatment. If you have full disclosure, you may decide to take a different course. At some point, I,too, decided that psychiatric medications were making a difficult situation worse.

Below is a condensed selection of paragraphs from the article.

. . . My father’s medical conservatism, I have since learned, is not unusual. According to an analysis by the Dartmouth Atlas medical-research group, patients are far more likely than their doctors to reject aggressive treatments when fully informed of pros, cons and alternatives — information, one study suggests, that nearly half of patients say they don’t get. And although many doctors assume that people want to extend their lives, many do not. In a 1997 study in The Journal of the American Geriatrics Society, 30 percent of seriously ill people surveyed in a hospital said they would “rather die” than live permanently in a nursing home. In a 2008 study in The Journal of the American College of Cardiology, 28 percent of patients with advanced heart failure said they would trade one day of excellent health for another two years in their current state. . .

. . . And so my father’s electronically managed heart — now requiring frequent monitoring, paid by Medicare — became part of the $24 billion worldwide cardiac-device industry and an indirect subsidizer of the fiscal health of American hospitals. The profit margins that manufacturers earn on cardiac devices is close to 30 percent. Cardiac procedures and diagnostics generate about 20 percent of hospital revenues and 30 percent of profits. . .

. . . In the summer of 2006, he fell in the driveway and suffered a brain hemorrhage. Not long afterward, he spent a full weekend compulsively brushing and rebrushing his teeth. “The Jeff I married . . . is no longer the same person,” my mother wrote in the journal a social worker had suggested she keep. “My life is in ruins. This is horrible, and I have lasted for five years.” His pacemaker kept on ticking. . .

. . . Not long afterward, my mother declined additional medical tests and refused to put my father on a new anti-dementia drug and a blood thinner with troublesome side effects. “I take responsibility for whatever,” she wrote in her journal that summer. “Enough of all this overkill! It’s killing me! Talk about quality of life — what about mine?” . . .

. . . On a Tuesday afternoon, with my mother at his side, my father stopped breathing. A hospice nurse hung a blue light on the outside of his hospital door. Inside his chest, his pacemaker was still quietly pulsing. . .

. . . A year later, I took my mother to meet a heart surgeon in a windowless treatment room at Brigham and Women’s Hospital in Boston. She was 84, with two leaking heart valves. Her cardiologist had recommended open-heart surgery, and I was hoping to find a less invasive approach. When the surgeon asked us why we were there, my mother said, “To ask questions.” She was no longer a trusting and deferential patient. Like me, she no longer saw doctors — perhaps with the exception of Fales — as healers or her fiduciaries. They were now skilled technicians with their own agendas. But I couldn’t help feeling that something precious — our old faith in a doctor’s calling, perhaps, or in a healing that is more than a financial transaction or a reflexive fixing of broken parts — had been lost.

“By pursuing clinical trials in foreign countries with lower standards and where F.D.A. lacks oversight, the industry is seeking the path of least resistance toward lower costs and higher profits to the detriment of public health.”

Full New York Times article found here